Starting pelvic treatment after 4 and a half years

[JuanMilo]

Without internal massage, you could be wasting time. Can you see Karl again?

I can see Karl again yep, I emailed him today to see what appointments he has available. Thanks for your advice, I'll keep you up to date!

[JuanMilo]

Another strange thing that's happened to me a number of times including today - I sometimes seem to shoot out urine while masturbating. This never happened to me before prostatitis and is only a recent thing in the last 6 months or so. It happens long before I ejaculate, and basically some watery liquid shoots fairly out fairly powerfully like an ejaculation, only there's definitely no orgasm. I'm pretty sure it's urine because it's nothing like semen or precum etc. It's very watery. Seems like things are kinda f*cked up down there

[webslave]

Probably from Cowper's glands
https://en.wikipedia.org/wiki/Pre-ejaculate

[JuanMilo]

Probably from Cowper's glands
https://en.wikipedia.org/wiki/Pre-ejaculate

I strongly believe it's urine, for one it seems to happen more often when my bladder's full and this may be TMI, but I get a lot of precum (from cowper's gland) when aroused, it's nothing like the very watery (and not sticky) fluid that comes out, the fluid is just like a small amount of urine. I've actually read of prostate cancer patients having the same issue after surgery. I'm not saying I think it's a severe or irreversible problem because of that, but since prostate surgery can drastically affect pelvic muscles, I think it's reasonable to think that organic pelvic floor dysfunction could cause similar issues.

I've scheduled to see Karl again in relation to internal work on the 21st of this month. Can't deny I'm fairly anxious about internal work, mainly because of my previous experience with uros, one of which gave me a 'massage' that left me in pain for weeks.

I've stopped the external massage for now. It just seemed to be aggravating the type of testicle pain that was a thing of the past for the most part before doing the massage. It was starting to become a daily thing, but after a few days not doing the massage, I feel ok again.

I'll continue the meditation and stretches and let you know how it goes with Karl when I see him again.

[JuanMilo]

Probably from Cowper's glands
https://en.wikipedia.org/wiki/Pre-ejaculate

Another thing that came to mind - at the start of all this I had huge issues with dryness all over my penis, do you have any thoughts about that? It definitely coincided with getting prostatitis, and the skin on my penis had always looked very healthy before that. My glans is still kinda dry and gross looking, which I'm obviously not thrilled about. I actually had a really strange episode at one point too, where my whole penis went leathery very quickly, for a matter of days. After a few days the skin all peeled off and the leatheriness went. Really bizarre. It probably sounds somewhat comical to other people tbh, but I was really perplexed by it. It was like a severe attack of dryness. When I told my (old) uro about it (who has been very useless throughout all this), he sat there quietly as he usually did and said 'yes, that can happen'. No kind of answer, really. Do you have any thoughts on this webslave? Thanks in advance!

[webslave]

Changes in appearance of the penis is usually caused by nerves. An example of how nerves can influence the appearance of skin is the disorder Complex Regional Pain Syndrome (CRPS), which is also called reflex sympathetic dystrophy syndrome (RSDS). See some images of how nerves can change the appearance of body parts here

[European]

JuanMilo, I can relate to the notion of kegeling/edging being the initial factor of CPPS. My CPPS started exactly that way and it took a lot of time to me to consider that not the multiple orgasm but the edging/clenching which I was used to for many years was most probably the main factor. My problems started as postejaculatory pain which was transformed during 1-1,5 years to full blown CPPS with pain 24/7...PT delivered some improvement but things were the same, still struggling with all the aspects of CPPS, depression, anxiety, pain etc. At least the etiology of my condition is now more obvious for me - no prostate inflammation, bacteria, etc. but thrashed pelvic muscles, mainly pubbococcygeus, adductors, ischiocavernosus and subsequent neural wind up and allodynia are key players in this havoc.

[JuanMilo]

Changes in appearance of the penis is usually caused by nerves.

Thanks for the response webslave, definitely makes a lot of sense. The pelvic pain specialist I saw years ago did say that nerves were likely responsible for my symptoms but said the Stanford/Wise-Anderson Protocol was 'outdated'. I think he implied the initial infection damaged my nerves, or something. Let's hope he's 100% incorrect

[JuanMilo]

European, sorry to hear of your struggles with CPPS. I don't think kegeling caused my problems, I think it was the initial, acute infection imo. But I don't think my habits have helped me.

Have you tried internal work/the Stanford/Wise-Anderson Protocol?

[European]

Yes of course, last 3 years I am doing intrarectal PT approximately once in a month. It helped a lot but did not eradicate flare-ups completely. Overall I am doing better but I am far from being cured. My most stubborn trigger points are probably in anterior pelvis, somewhere near pubbococcyges, bulbospongiosus, ischiocavernosos. These are difficult to reach. Maybe inflammation of right pudendal nerve is also significant factor.

[JuanMilo]

Do you do any self care?

[European]

I am tryiing to resume exercising depicted in Headache in the pelvis, but still struggling....

[JuanMilo]

Sorry to hear you're still struggling. Really hope you get to the bottom of this. What country are you from out of interest?

[carbonevo]

Euro I might sound repetitive here, but you've been dealing with this for 6 years and have not found a relief yet despite trying pretty much everything from ATB to nerve blocks to physio... if this was purely physical those would've sorted this already, dont u think? The biggest bone in human body heals within 6 weeks... how could this take 6 years? There's gotta be something else.
Read Ezer's story, he was a moderator on the PNE site, you can check his profile there...
viewtopic.php?f=37&t=8416&p=48938&hilit=Ezer#p48938

2 PNE surgeries and in the end it turned purely psychological. Psychological not in the meaning that he was fked up or an idiot, but because he's psyche kept his nervous system aroused, hence he was experiencing physical symptoms. You said yourself that you had a decent time during the summer, if this was physical nothing in the world would have made the pain lessen or disappear. If there's a psychological component to this.. by physio, massages and blocks you are simply treating the consequences... not the root cause.

[European]

Carbonevo you are basically right that psychological background/anxiety is playing one of the prime roles in this havoc, I agree with you. The initial onset was inflicted by muscular injury/spasm and all this psychological vicious circle of depression/anxiety/catastrophic thinking did not enable the body to properly heal...I had this pain several times on/off in 2009/10, being fully asymptomatic in-between...but the feeling of "fragile" pelvis was imprinted deep in my mind, I know...fear of any further ejaculation etc, you name it.

I re-read thoroughly both Headache in the Pelvis and Paradoxical Relaxation. While former book is completely clear cut "bible" for our suffering, the latter (paradoxical relaxation) is more diffuse and individually interpretable...But I agree that lowering the autonomous nerve system is the key in long term and stress copying strategy an essential part of healing/improvement...I am going to study Sarno work, but I think that most of our cases is combination of physical and mental vulnerability..Wise/Anderson protocol is probably best targeting it...naming it psychoneuromuscular condition...I am consulting all this matter with my cousin, who is a psychiatrist. JuanMilo, I am from Slovakia.